35-year-old Edmonton woman diagnosed with fatal, fast-moving dementia: What is CJD?
A 35-year-old Edmonton mother has been diagnosed with a fatal, fast-moving form of dementia, making her one of the youngest people in the world to face the rare disease.
Sabrina Lauman, who’s married and has a two-and-a-half-year-old daughter, has Creutzfeldt-Jakob disease (CJD), according to a Go Fund Me page that a friend has set up for her family.
“This is a terminal disease and [Sabrina] has only been given a few months to a year to live,” the fundraising site says. “This is heartbreaking on so many levels.”
According to a Global TV report, Lauman is also apparently pregnant.
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CJD is extremely rare, affecting about one or two per one million people, according to the Alzheimer Society of Canada.
Typically occurring in people over 50, it’s caused by a prior, which is a protein found in the brain. In its natural state, a prion is harmless; however, it’s toxic to brain cells in its abnormal form.
“When this protein gets into the brain, it causes the brain cells to die,” says Nalini Sen, director of the Alzheimer Society’s research program. “Under a microscope, the brain appears like a sponge, with many tiny holes within the brain tissue.”
The disease can also occur in cattle, going by the name bovine spongiform encephalopathy, more commonly known as mad-cow disease.
About 10 per cent of CJD cases in people result from a genetic mutation. In rare cases, the disease can be inadvertently transmitted during a medical procedure involving human tissues or from exposure to cattle.
The remaining 90 per cent of cases are “sporadic.” They occur without explanation when the prion protein begins to form in one or a few brain cells and spreads to the rest of the brain.
“There’s no clear warning signs or reason as to why sporadic cases take place,” Sen says. “There’s no treatment and no cure, and there’s no effective way to slow the progression of the disease.”
Diagnosis can only be confirmed upon death, through a brain autopsy. However, several other methods can help point to the disease, including magnetic resonance imaging (MRI), electroencephalogram (EEG), lumbar puncture, blood tests (to look for genetic disease by through DNA), and a detailed medical history.
Upon being diagnosed, few people with the disease live beyond a year, losing the ability to move, speak and eat.
“It’s important for people to be aware of symptoms, things that can be observed by family members or people close to them,” Sen says. “They can experience unsteadiness when they’re walking or standing; they may be more clumsy than usual and they may experience sudden jerkiness. They may experience depression or be easily irritable or have a change in behaviour.
“They may suddenly have problems with vision, including blindness, or there may suddenly be loss of the ability to speak. They may have difficulty swallowing.”
Other symptoms include memory loss, thinking problems, and stiffness in the arms or legs.
Despite there being no treatment, Sen says it’s important people seek medical assessment and care immediately. Nursing care can ensure the person is as comfortable as possible.
As of 2016, 231 cases of variant CJD had reported worldwide, including two in Canadians exposed to BSE while living abroad, according to the Alzheimer Society.
The Government of Canada’s CJD Surveillance System reported 76 cases of all forms of CJD in the country in 2017—73 of them sporadic—and 14 as of June 30 for 2018 (13 sporadic).
While sporadic cases of CJD are impossible to prevent, Sen notes it’s important for people to live a “brain-healthy lifestyle” to help reduce the risk of other forms of dementia. This includes getting adequate sleep and avoiding smoking, recreational drug use, and excessive alcohol consumption.
“Eat a healthy, Mediterranean diet with all the colours of rainbow,” she says. “Engage in aerobic activity; walking is the best form of aerobic activity for all ages. Engage in social activity. things that make you laugh, challenge your brain with things like crossword puzzles, and engage in the arts.”
Lauman’s friends and loved ones hope that the Go Fund Me page will help offset expenses related to her illness.
“We would hope that Sabrina and her loving family be able to enjoy any remaining time freely without the worry of work commitments and income barriers,” the page says.
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